Fighting Alzheimer's, One Stitch at a Time

On June 21 a team of knitters at Sarah Jane’s Yarn Shoppe in Fort Wayne will join the Alzheimer’s Association in The Longest Day® to show those facing Alzheimer’s disease that they are not alone. The team will knit continuously from sunrise-to-sunset on the longest day of the year to honor and raise funds for the more than five million Americans living with Alzheimer’s disease and their caregivers.Fort Wayne residents Jana Powell and Laura Storie are leading the effort locally. Both Powell and Storie are Alzheimer’s Association volunteers. “I want the Fort Wayne event to increase disease awareness and advocacy,” Powell said. “We also want to promote the Alzheimer’s Association’s services of support, education and research advancement.” Storie is excited to be spearheading such a unique event. “For years, I have found creative ways to raise awareness and money to fight Alzheimer’s disease, but knitting is a first,” Storie said.

Sarah Jane’s Yarn Shoppe owner Linda Yovan said the event is meaningful to her and her sisters because their mother, whom the store is named after, suffered from Alzheimer’s disease. “We have a long history of dementia in our family,” she said. “Anything that raises awareness and helps find a cure is a good thing.”

Anyone can join the group on June 21 free of charge. Knitting experience is not required. In fact, beginners will be able Jane’s Yarn Shoppe team member for The Longest Day, visit www.alz.org/thelongestday. If you’d like to join in the fun but are not interested in being an official team member, call Sarah Jane’s Yarn Shoppe at 260-471-9276 to guarantee a seat. Walk-ins are welcome and encouraged.

In a Child's Eyes

I have always said that although being the caregiver for my mom (who suffers from Alzheimer's) is hard beyond belief, I wouldn't have it any other way. My kids, Jake, 10, and Reese, 7, have had the opportunity to really know their grandma. They have experienced my mom, their grandma, at every stage of Alzheimer's disease.

Jake is an old soul. He is very intuitive when it comes to people's feelings. He is a caring, loving, and patient boy. He has always loved his grandma and cherished what he called their “special time” together. Sometimes he needed time with her without his precocious little sister clamoring for attention, and my mom understood that.

Mom has always loved to walk. In fact she is still somewhat obsessed with it. She walks every day, in the mornings with a friend and then constantly all day around the ward where she resides. When she lived on her own, she would take Jake for walks on the trail. They would fill his little backpack with water and snacks, and I would sometimes provide a disposable camera for him. He would see his grandma take pictures of flowers and he wanted to do the same thing. This became “their thing” to do.

She would have him spend the night, play trains with him, sing to him, and let him watch his favorite Thomas the Train or Little People videos. She was a calming and safe presence in his life. But what happens when the person you have known starts to change? It is hard enough for an adult, but how about a child? Just like his grandma, Jake has accepted her changes with grace.

There was a day when I was very upset about what was going on with Mom. I told them there would come a day when Grandma wouldn't remember who we are. Reese was so young, three at the time, that she just said, “Okay, Momma.” Jake, on the other hand, stopped playing his game, looked up and said, “Mom, we just have to enjoy each day that we have with her.” My son was right. That was five years ago, and we continue to take each day at a time.

As the years have passed and Mom has changed, both of my kids have accepted every single move and change that has developed. Although Jake sometimes says that he liked it better when we got to visit Grandma in her apartment, he still visits her in the locked down ward. Now, this place can be scary to a child. In fact, my nephew and niece are always very nervous to go visit their grandma when they are in town. It is like nothing one has ever experienced. Imagine going into a locked area filled with strangers. They are all doing something different-- from sleeping, to talking and yelling at things and at people who only exist in their minds. They are people who are stuck in another decade. Some talk and take care of dolls like they are real live babies. Others stare and don't speak, and still others lecture as if they are still teaching. Some try every door to see if they are open, or a few may offer you their walker. This could be overwhelming for anyone, much less a child. This has simply become normal to me and my children.

Despite all the “chaos,” Reese loves to go visit Grandma. She loves to talk to her and often says, “Grandma is funny.” Funny because what Grandma says, doesn't make sense. Reese doesn't care. She just wants to see her grandma, give her a hug and play with the baby dolls that are there. Reese has totally accepted her grandma for exactly who she is at every moment.

Reese, too, has fond memories of her grandma. Reese remembers Mom making tea parties for her. They would dress up in Mom's jewels and sit down to a fancy spread. Reese always would go to my mom's closet and try on every pair of her shoes, scattering them around and finally choosing a pair to wear around the house. Reese also remembers when my mom could no longer read and she would read to her grandma. There she was, a petite five-year-old sitting and reading to her grandma, 70 years old. Roles were reversed, but Reese was so proud of herself that none of that mattered. Some days they would draw pictures together and laugh at their attempts of drawing certain things. Good memories, just as they should be.

Mom understood Reese's passion and energy, just as she understood Jake's more reserved, cautious nature. She relished their snuggles and the sweet little voice whispering secrets in her ear, and she still does. She perks up when the kids come to visit. Although she has long forgotten their names, she remembers their faces and their sense of being. They hug her and talk to her and bring her treats that they know she will share with them. They walk with her and love coming to visit when it is activity time in the morning. They dance with her and make her smile and feel loved.

They have grandparents who go to their lacrosse and soccer games and visit their schools. They have a “Papa” who they visit in Virginia where they have adventures and memories of their own. They have cousins in North Carolina who they love as a brother and sister. The memories and experiences with my mom, their grandma, are much different. And although all of the experiences in their lives help to shape who they are as beings, I believe that the experiences with their grandma, an Alzheimer's victim, have made them much more compassionate, understanding, and accepting individuals.

They have learned to love a person for whom they are at the moment and to accept and love someone unconditionally. They learned that all people are different, but we are all human. We all have feelings and wants and needs. They have learned how having a grandma with Alzheimer's affects their own mother. They know how much I have to do for someone I love and that it is really hard and trying at times. They hug me when I cry, and they understand when I need a self-imposed timeout out to gather myself. Most of all, they see how I love my mom, no matter what.

These two little people have learned more about human compassion in their 10 and seven years then some learn in their entire lives. They bring joy to their grandmother, they bring their trusting souls to their cousins when they too come to visit their grandmother, they bring smiles to the other residents with their bubbly presence, and they bring love, understanding, patience and pride to their dear ole mom. I do my best to teach my children by example-- by how I live my life day in and day out. But what I found out is that I, too, learn from them and their examples of compassion, joy, and acceptance.

Molly Godby lives with her family of four in Zionsville, Indiana. In 2007, her mother, Lee, was diagnosed with dementia with probable onset of Alzheimer's. Molly has been caring for her since. Molly is a stay-at-home mother of two. She enjoys writing, doing CrossFit and spending time with her family and friends. She also has a personal blog that you can read at www.abundantlyawesome.blogspot.com.

Alzheimer's Symposium for Caregivers

On Thursday, June 13 from 9 a.m. to 12 p.m., the Alzheimer’s Association will present an Alzheimer’s Symposium at the Kathryn Weil Center for Education in Lafayette.

Speaker Keven Dodt, M.D., is a geriatric physician with Franciscan Physician Network and will present an Alzheimer’s review. Mary G. Austrom, Ph.D., is a professor of clinical psychology in clinical psychiatry at IU School of Medicine and an education core director at the Indiana Alzheimer Disease Center. She will present on effective communication with persons with dementia. Denise Saxman, L.M.S.W., is the associate director of care consultation and early-stage services for the Alzheimer’s Association, and she will present on adapting activities to meet the needs of the person with dementia.

Professionals and family caregivers are invited to attend the free symposium. CEUs are available for a fee.

Conference Offers Insight to Caregivers in Merrillville

Professionals and family caregivers are invited to attend the Alzheimer’s Association’s Caregiver Conference in Merrillville on June 28. The conference is a day-long event from 9 a.m. to 3 p.m.

This conference will feature dementia expert, Teepa Snow, MS, OTR/L, FAOTA, who trains and consults for agencies, facilities and families. The conference will cover a variety of topics that both professional and family caregivers will benefit from hearing. The sessions include "Managing Behavior – Start With Yourself", "Using Music – How to Make it Work, If you Are Not A Music Therapist", "Improving Your Hands-On Skills For Giving Care", and "Humor And Caregiving – Learning How To Laugh!"

In addition to attending the conference sessions, caregivers will have a chance to visit exhibitors to learn about local services that may assist them. Social workers and healthcare facility administrators will receive four CEUs.

For additional conference or symposium details and to register, please call the Alzheimer’s Association 24/7 Helpline at 800-272-3900.

Popular Indianapolis Restaurant Fights Alzheimer’s

On June 15, Jeff Edwards, owner of Edwards Drive-In, will host the Midwest Custom Car Revival at his restaurant located at 2126 S. Sherman Drive in Indianapolis. Edwards has teamed up with old car lovers to raise funds and fuel the care, support and research efforts of the Alzheimer’s Association Greater Indiana Chapter.Auto enthusiasts will bask in the glow of shiny chrome as numerous variations and customized versions of cars from the 1930s through early 1960s will be on display from 9 a.m. to 5 p.m. There is an entry fee of $10. All proceeds will be given to the Alzheimer’s Association Greater Indiana Chapter.

“Great food, games and awards will all be presented at the event, but the focus will be to further gain awareness and raise some funds for Alzheimer’s research,” said Edwards.

Bob Davis, event organizer, calls custom cars some of America’s most unique creations. “None of these cars are stock. They’ve been modified – not to go fast (like hot rods), but to simply look cool,” Davis said. “Our goal was to stage a reunion or revival at Edwards so like-minded folks can gather with their cars. It’s a little piece of Americana indeed.”